Another day in the books...

Actually, alot has happened in the last few days. First of all, my daughter's party went well and the watermelon cake that I described in the previous blog came out great! Here is a pic of it on the left..yummy looking isn't it? If you want the recipe, I will be happy to post it, just let me know ;)
Most of my family members made it to the party, we had a cook out with all of the fixings, as usual, there was enough left overs to feed a small army which I think is great, it makes for easy dinner planning for the next few days. I just will be sick of sausages though. Now that my little girl is now 16, she wants to try out for her permit this coming Monday. I think that she will do well, she has been practicing on line tests for the written part. I still can't believe that my little peanut is now old enough to drive!
Speaking of driving, I tested out my van and love it! The hand controls are easier than I thought they would be. The gas is a bit sensitive though, but not hard to adjust to. I liken the controls to the steering on my power chair. It too is sensitive and took time to master, but I finally did after many attempts. I will no doubt do fine with the van's as well. It was so cool to finally sit in the driver's seat and simply drive. I drove to my brother's house, which is a few miles down the road from me. The only thing that was an issue is that I was hugging to the right too far at times. I am used to a much smaller vehicle, not a full sized van. After a bit, I got the hang of it though. The guard rails were spared, this time!

Tomorrow believe it or not, I am getting a tattoo, one that I designed. I have always wanted one, and so after much deliberation, I am just going to do it. I know it will sting, but hey, I have had many awful things done to me...at least the end result this time around should be really cool. Here is that drawing on the left which I designed myself, it is going around my ankle. I will take pics of it and share it with all of you when it is done. I honestly can't wait until it is on my skin.



I also have been fairly busy with my art work, especially my watercolors. I love doing them. Today was the most perfect day to paint, it was about 75 degrees out with a low wind and sunny skies. Comfortable weather to create. The last few days I haven't been able to get out and work on my paintings because there was torrential rains...I was very disappointed so I just sketched. Anyhow, here are a few more of my paintings. I think that I am finally getting the hang of it. As I wrote before, it is so relaxing just to sit and paint...though after awhile, my body rebells with stiffness and joint pain. My hands sometimes will hurt and I am forced to stop which bothers me sometimes as I feel like I could pain for a bit longer in my mind. But, I must obey what my body is trying to tell me or suffer the consequences.

As for today, I feel okay....my lungs are status quo, they should be since I have been so aggressive with my care. I have a few doctor appointments coming up, this week I see the urologist. Why the urologist? About two weeks ago on a fateful Thursday, I decided to pass a kidney stone, the first one that I was aware of. Let me tell you, when people say that it is comparable to giving birth, they aren't lying! I thought I was going to die right in my bed, I was curled up in a fetal position, unable to find comfort. I began to vomit non stop despite anti emetics...I was miserable. Initially, I had thought that I ate some tainted McDonald's as their fare was the last bit of food that I consumed. After a few hours of retching and increasing pain, I relented and told my mom to take me to the ER. For me to go to an ER, I usually either have to be decapitated or hemorrhaging, the pain was that bad. I got there and was whisked into a room withing minutes, apparently my discomfort was easily read on my face and my pallor was scaring the nurses. Dr. W came in and assessed me and prescribed some much needed meds, IV Dilaudid, 2 mgs. They accessed my port and shoved it in, within minutes, my pain level had gone from a near 10 to a 7 which was not great but better than excruciating. I was taken for a renal CT and voila! There were the stones, two of them...After multiple doses of Dilaudid and IV Zofran and IV fluids, I felt well enough to go home and medicate myself until the stone passed. Four days later on Monday, it finally passed. It was not nice and round, it wasn't even smooth...it had shards sticking out of it! No wonder it hurt so badly....
So, that is the saga behind the visit to the urologist. He will look at my CT scans and see if he wants to go after the remaining stone. We shall see...

The following week I see my primary doc and ENT for my trach change. That isn't such a big deal these days, but my stoma is worrying my doc a little. Apparently it is starting to shrink or scar up..if it gets too small, he will have to revise it. I have had one such revision done about 2 years ago, it wasn't bad and they did a good job. The week after that, I see the neuro in MGH in Boston...he is supposed to be top dog there...I have a wicked muscular dystrophy that docs have had difficulty in determining what kind it is. It is my hope that this fresh batch of docs will figure it out and give a name to the type that I have. I will definitely update you guys when that visit comes and goes.

Well my friends, I should go for now...until next time and peace, Jenn :)